Looking for some guidance as not getting very far with doctors.
Have no thyroid after having thyroid cancer and I keep swinging between hypo and hyper. In October I had bloods done and results were TSH 0.1 and T4 19. Consultant was happy with this due to keeping TSH suppressed. Before Christmas I started getting symptoms of hyperthyroidism - not sleeping, severe migraines, extreme hunger so had bloods done again 3rd Jan and results are now TSH 0.32 (0.3-5.0) T4 25 (10-23) vitamin D 58 (50-150 range).
GP wanted to put me on Propranolol for the migraines however when I have tested my blood pressure at home it has been ideal so I don't want to take them.
I also stopped taking the mini pill at the beginning of January after taking for a year in the thought that they may have been causing the migraines. I am just on the first period and it is very heavy.
My symptoms seem to be getting worse and I guess my questions are
Does anybody know why we switch between hypo and hyper without really changing the medication?
Am I really hyperthyroid or could my symptoms be linked to stopping the pill?
I am going through a lot of stress at the moment at work which unfortunately I can do nothing about but the way I am feeling is having an impact on that now and I can't afford to take time off but I also struggle to get through a day due to episodes of intense sweating and dizziness and fatigue.
I've also wondered if it is worth getting a diabetes check and full blood work up.
Thanks
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rachjo27
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Yes, it's definitely worth getting full blood work. It must include ferritin, folate, B12 and a full iron panel. Your are low in vitamin D by the looks of things. Is the measurement nmol? I so then around 100nmol is said to be best. Are you taking supplements? If not then SeasideSusie has best suggestions on amount of D3 to supplement, however, absorption is very individual and you need to get blood tests at least every 6 months until you have worked out how much you need. Once you've reached optimal levels you might need a maintenance dose, at least in the winter months but probably all year around.
The pill and other hormonal drugs can alter the way we absorb or utilise levothyroxine and so dose adjustments are often needed. Other factors can be a change in levothyrxoine formulations so make sure the pharmacy always refill with the same brand.
When on suppressive doses of levothyroxine for thyroid cancer, it is possible to get slightly overmedicated. A very slight adjustment in levothyroxine might make a difference, so perhaps just taking 50mcg less one day in the week only. Ask the consultant to clarify your target TSH level, then work to that. However, the symptoms you describe could be due to low nutrient levels rather than your levothyroxine dose. For example, low iron levels could cause dizziness, fatigue, sweating and headaches. Low B12 could cause dizziness and fatigue too.
Unfortunately I have found I need pretty frequent blood tests as all kinds of things affect my thyroxine levels, infections, drugs, antibiotics, dental treatment, change in foods and diet, change in levo brand and timing of taking levothyroxine (for example taking at night rather than morning). I have discovered that migraine with sickness and rapid heart rate can be a result of being slightly overmedicated. I find I have fewer symptoms from being undermedicated than overmedicated. I've also discovered I need optimal vitamin levels to function well and be symptom free.
Thank you so much for your response you have helped me more in that one message than I've been able to find anywhere.
The only medication I am taking at the moment is the levothyroxine which this month is a different brand from the same pharmacy. I will ask the GP tomorrow when I go if I can have a full set of bloods done.
Your GP should be able to do a full blood panel. Ask for it to include TSH, FT4 and FT3 along with full iron panel, B12, folate and ferritin. You already have a recent vitamin D result. GP will probably not offer Vit D3 supplements as you are within the NHS range but you are at the bottom of normal range and being at the bottom will not make us feel well.
When you have all the results, post them here as experienced people will help to interpret them. Make sure you get a print out from reception that includes the laboratory ranges. Lab ranges vary and we need them to interpret results. You can also register for patient access to blood test results online. AS your GP reception to sort it out. You may need to fill in a form and show ID and will then be given a password to login. That way you can view results of tests done in primary care, it won't give you access to hospital results.
Which levothyroxine were you on and what have you been swapped to?
Thank you for this I have been to the doctors and got a blood form however they have said they will only test for tsh and ft4. But all vitamins are on it.
I ordered my repeat and the pharmacy have given me actavis instead of the usual teva.
In terms of NHS testing then, the only thing you can do when the doctor suggests increasing or decreasing your levothyroxine on the basis of TSH or FT4 level, refuse until FT3 is tested on the basis that your FT3 might be within range or outside of range and you're not prepared to take a risk of affecting other body functions if FT3 is not within the lab range as it's the only active thyroid hormone and the hormone that has an affect on the heart and bone.
FT4 is a pro-hormone and has to be transformed into T3 for thyroid hormone receptors to recieve thyroid hormone. Therefore, as FT4 is not the main active hormone, if you have a little more than the lab range floating around it's not necessarily a problem so long as you are not transforming it into so much FT3 that your FT3 goes over and above the lab range.
TSH is not a thyroid hormone at all but a pituitary hormone that stimulates the thyroid gland to produce more thyroxine. If you have sufficient thyroid hormone then TSH reading will be low in the lab range. However, if it's below the normal lab range then it's possible your FT3 might be above the lab range and even with thyroid suppression for thyroid cancer the aim should be to keep FT3 within the lab range. On that basis you could argue that an FT3 test alongside the FT4 is imperative.
There is also a possibility that your FT4 may be very high but not converting into T3 in which case your FT3 would be too low or low in the lab range (it's said to be best 75% through the lab range, so at the higher end of normal). You then certainly don't want to take propranolol or anything that will further decrease the FT3 as your heart needs enough to function well. You could therefore also refuse to take the propranolol until your FT3 is tested.
If you were given information by the receptionist about thyroid testing ignore it and discuss with the doctor anyway. Make sure you point out you are being treated for thyroid cancer and the testing protocol may differ from what they expect. Doctors don't have time to read your notes so unless you tell them what you are being treated for then they are unlikely to voluntarily find out what kind of testing is required.
You could get private blood tests through online lab used by many on this forum. If you take a look at Thyroid UK's website you'll find a list of reliable labs under the 'blood tests' side tab. You can do a fingerprick test, send it off and get results back within a few days. If you do that you need FT3, FT4 and TSH testing at the same time as you need to read them all together. Your doctor however, might ignore the results.
If you were well on TEVA you might want to try going back to it to see if it alleviates symptoms. A change in levothyroxine brand may change your thyroid hormone levels so anytime the pharmacy changes your brand it will necessitate blood tests in 6 weeks time so avoid changing and always check your tablets before you leave the pharmacy, ask for your script back and take it elsewhere if they cannot oblige with the brand you need. Personally, I prefer Actavis but everyone is different.
Write to your oncologist and ask them to confirm what TSH level you should target. Make sure a copy of it is in your health notes and keep your own copy too. If you do not get help from the oncologist then ask your GP to transfer your thyroid cancer care to another centre and make sure it is one that does RAI and has a specialist centre for thyroid cancer and an oncologist who is a specialist in thyroid cancer not just an 'interest' in thyroid.
If in the UK, you could also contact Butterfly Thyroid Cancer Trust and read their website. Many of us struggle to get the advice we need from our GP's, especially in terms of managing our thyroid hormone into the longer term. As you have had a TT, you could ask for a yearly or bi-yearly DEXA scan when you become menopausal butterfly.org.uk/
So I've got some blood test results as said previously my GP won't do FT3
TSH - 0.25 (0.35-5.00)
FT4 - 21.4 (11-23)
Serum folate - 2.5 (3.9-19.8)
B12 - 310 (200-900)
Serum ferritin - 15 (12-300)
HBA1C - 33 (20-41)
Any advice would be brilliant as my GP says everything is fine and he doesn't need to see me but I'm currently off work feeling rubbish and need to get back to work.
Hello rachjo27, hopefully SeasideSusie will respond with more accurate information about vitamins but as you can see from your results your folate is below the NHS range. What's the point of having an NHS range if doctors are going to say everything is fine when you are clearly below range?
B12 is very low as it's below 500 which can cause neurological symptoms. Your ferritin is only just above range so you need to ask for a full iron panel to find out what is going on and whether you are iron deficient.
There is no Vit D result which is crucial as it is known that people with thyroid conditions are often deficient in vitamin D. Ask your GP to test vitamin D. Make a list of your symptoms to give to the doctor and if you can't get out into the sun much during the daytime then tell the doc that too.
Cancer and Vitamin D deficiency and supplementation for thyroid surgery. Some research.
Do get in touch with Butterfly Thyroid Cancer Trust as they have good information. You won't be the first person who's had a thyroidectomy and is struggling to get back to work or stay in work due to feeling unwell. You are, however, probably the only thyroid cancer patient your doctor has ever seen.
Are you aware that all blood tests for thyroid hormones have to be at the earliest possible? Fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and test and take afterwards.
You state you take levothyroxine alone and my personal view is that those who have no thyroid gland at all should be given a T4/T3 combination.
T4 is an inactive hormone and it has to convert to T3 the Active thyroid hormone which is needed in all of our millions of T3 receptor cells and the brain and heart have the most. Sometimes we don't convert it well and I have my thyroid gland but levothyroxine alone made me feel more unwell than before I diagnosed myself - TSH 100.
Researchers - several teams - have found that combination of T4/T3 suits many people.
You can see on the following link that a preference for a combination dose T4/T3 may be warrented. A combination of 3:1 or 4:1 is recommended. If you're in the UK T3 was withdrawn from being prescribed but a case is before the House of Lords due to the fact that many feel better when T3 is added or T3 alone is taken. Some members source their own T3.
Yes after reading others posts on here I always have my bloods done first thing in the morning and don't have anything beforehand.
As you have said I'm in the UK my GP surgery are useless they want to get me in the lower range by basically putting me back down to 125mcg a day when last year that drop made me completely hypothyroid
Be careful with propranolol, it's the go-to drug for GP's who really don't know anything much about thyroid cancer. You might be the only patient who has had thyroid cancer in their surgery and the only one they meet in their GP career. t is used for patients who have Graves disease and are definitely hyperthyroid which is different from being slightly overmedicated. Overmedication can be easily corrected unlike Graves disease which is more complicated and lengthy to manage.
Propranolol itself can have side effects and then you complicate working out what is causing which symptom. It made me very 'muddled' as it does cross the blood brain barrier. It didn't resolve my symptoms either and made things worse in the end.
Propranolol is specified as a first line prophylaxis for severe migraine. I've been on it for several years for essential tremor, with no side effects. If I wasn't taking it I'd be back to walking diagonally and doing other weird stuff. Although it can apparently increase RT3 and interfere with its elimination, I've not noticed any difference thyroid-wise either.
Yes, if it's for migraine only then I can see the point. If, however, it's to mitigate effects of TSH suppression then it could be a mistaken remedy, get the advice of the consultant oncologist or his/her team first. I found it only confounded the problem.
I do agree it may work for some people I have a friend on it for anxiety but she has a full functioning thyroid and it works for her so wanted to get the opinion of those with thyroid issues. It just worried me that it talked about lowering blood pressure when mine is normal so I didn't want to add anything to alter that
Which brand of Levothyroxine have you now got? Is it Teva ?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.
Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Your vitamin D is too low, you'll need to self supplement to improve to around 100nmol, at least over 80nmol
Getting vitamin B12, folate, ferritin tested plus FT3
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
The GP probably won't do TPO antibodies since rachjo has no thyroid, at least that's what I'm thinking is likely. antibodies are usually checked before thyroidectomy but TPO unlikely to be present after, regardless - what do you think? Thyroglobulin antibodies are checked because they can interfere with results after RAI. This is done at the hospital and not in primary care.
I do fast for the blood tests I went off advice I read on here. I am currently on a mix of actavis and teva. Teva has been my usual medication but in my recent repeat two of the boxes had changed to actavis.
My antibodies only get checked once every six-eight months when I go to see the Endocrinologist. Although I have had to find another endocrinologist as my previous one only focused on my weight and said that I had chronic fatigue syndrome and I would be lucky if I wasn't bedbound in three years time to which I fully disagreed and sought a second opinion.
Thank you for the links I will have a read of them.
and most members could confirm that doctors are unaware of any symptoms and are apt (if TSH is o.k.) to give another prescription for a symptom rather than looking at the Free T4 and Free T3 and it could be due to these being low.
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